Cleft Lip and/or Palette

[Pretty Butterfly]

I'm SO happy he is doing so well!! With centrelink, we have filled out every form they have, and there is no difference to our bubbas from the others. There is no financial help as they are not "bad enough". We can claim IPTAS and that is it, but it is a help none the less!

keep us posted on little bubbas progress... they are very special aren't they..

[Nettie]

Hey there clefty mummies!

Just an update - Liam's doing really well (new photo posted in my Gallery) and doesn't use a feeding plate anymore - he's even worked out the bottle so we don't have to 'squirt' it in, he sucks it himself! Clever little man!

However, I'm having some major supply issues with my EBM so that I'm not really keeping up. He's on at least one ff a day just so we can keep the supplies up. I've tried some meds from the Docs, but he didn't give me a repeat, so I'm out and will see my Ob on Tuesday to get more.

Have considered giving up the pumping because it's such hard work and if my supplies don't improve, I think I'll dry up pretty soon! Funnily enough, it's not the pumping that bothers me but the washing up we have to do all the time... my hands are sooo dry and it takes so much time every day! Stupidly, even if I changed to ff, there'd still be the washing up - just not the pumping bits! Der!

Anyway, just wanted to 'check in' and say G'day. How are your little fellas doing??

SRV - you're in SA? I'm in Murray Bridge - where are you located? I've heard there's a support group - Cleft_SA, but haven't chased it up yet.

[leesha]

Hello everyone! Came across this whilst searching for information and advice on Cleft Babies! Our unborn baby is due June 17th which is only 10 days away and was diagnosed with bilateral cleft lip and palate at our 20 week scan! So we have known for awhile and had time to get our heads around the whole thing!
I guess I just wanted to touch base here and let you know who I am because I am sure I will be back with loads of questions once bubba is here! I have had help and advice from Cleftpals but needed a forum like this where I can just jump on at any time and ask questions or just debrief how I am feeling.
I am getting nervous now it is getting closer but excited at the same time!
Anyway I will be back.......
Thanks!! xoxoxoxo

[Nettie]

Welcome Leesha!

Everyone is a great support on here so I'm sure you will feel encouraged & helped.

Good wishes for the birth and we look forward to photos of your little bundle!

[Pretty Butterfly]

Nettie, the only meds that worked for me was motilium, and I took 6 a day. I had an abundent supply after that!!! Your doc can ring a number and get it really cheap for you too. I got 10 boxes for about $6.00 that lasted for ages. And he can give repeats of this med too. Good luck if you decide to try it!!!
* running off to see Liams photos!!*

Leesha, Hi honey!! We know EXACTLY how you feel babe...

The first thing to work out will be his feeding. You will need to take a cleft bottle with you, (they can lend you one, but trust me, you want your own!) and they will probably tube feed him for a couple of days. It's a lot less scary than it sounds!!
They will help you express your colostrum for the tube if you wish to do this. Otherwise he will be given formula. If you intend to express for bubba, get a good double pump!! But you can use the hospital grade one while your in there. They will also make you stay till the tube is out, and bub can use the bottle, but I only stayed 3 days, as Kane was very good.

Good luck honey, having Cleft Bubbas is VERY special, and will capture your heart!!! Once the feeding is sorted, they are no different to handle till surgeries start.

Let us know how your going, and show off your photos when he/she is here!!! Cant wait to see them!!!

[Nettie]

Hey PurpleMama!

I'm currently on Motilium, but my Dr only gave me one prescription - one week's worth. He did say that if I need more I can ring and he'll give me another prescription, but he reckons that it will boost my supply so that if I keep expressing, it should stay at the higer level. I'm willing to give that a shot! It's already helping - I've got a bottle there ready to freeze which is extra supply.

I'm supposed to take one tablet, three times a day on an empty stomach... I ask you - how many nursing mothers have an empty stomach three times a day??? I'm hungry all the time!! Stupid male doctors...

Just heading to my gallery to put up some more cute piccys of Liam...

[Pretty Butterfly]

Hopefully you'll be different on the Moltiluim than I was, But just missing one tablet, once started, dropped my supply.

3 a day is recommonded for mums who's bubs can suckle at the breast, and help keep supply up. As Cleft bubbas cant, I needed 6. I found it didn't matter when I took them, or with food or not, as long as it was in my system, I had heaps of milk!!!

Your Doc should give you many repeats. just missing a couple of days, waiting for an app, can drop your supply, and have you starting all over again!!

SOOO glad your going so well too!!!! Big congrats on still expressing!!! I know just how demanding it is, but SO worthwhile!!!

[Smx83]

I cannot begin to thank you guys for starting this support group, I had tears in my eyes just reading all the messages everyone put up. I have a little baby girl who's 7 week old, Taylor who was born with a cleft palate. When she was born, I had 3 tramuatising days in the hospital when she was first born, trying to breastfeed her unsuccessfully, on the 3rd day after she still had no food I got in touch with a breastfeeding specialist who picked up on her cleft...surprisingly not one midwife or Dr picked it up and would not let me bottlefeed her until Taylor was finally diagnosed with a cleft. I found out on the 3rd day and I can say unfortunately it was the worst day of my life to date. She had failed her hearing screening on day one and passed on day 3, I have a moderate to severe hearing loss and wear hearing aids, my whole life I prayed I would never have children with a disability and I was so paranoid that she would be born deaf that I cried when they said she failed her hearing test on day one so the night before I kept praying she would pass her screening on day 3 that when she did I was crying with joy that she was okay and she could hear....10 minutes later I was told she had a cleft palate...the waterworks came on again.....it was such a horrible day, I was so scared and upset....I had a bad childhood with my disability & being treated so badly that I never wanted any thing like that to happen to her...once I was told of her condition, in came all the doctors and gave me so much information & talked about operations and feeding equipment I found it so hard to not cry, also not being able to hear as well made me more upset as I couldn't hear half of what was being said. I brought her home and I struggled with the pigeon teat, my arm got so sore from squeezing so hard...she couldn't suck very well unless I squeezed the bottle really hard. Eventually when I had a completely useless arm I contacted a speech pathologist and begged her to help me find another way of feeding as my arm was so painful, I no longer had strength left. She found a teat called the chu chu easy feed teat which was a miracle for me, it worked amazingly for her and what used to be a 2 hour feed was now a 15-40min feed...I started to cope a lot better & stopped feeling as emotional as I could feed her properly & was finally gaining some weight. It has been hard but I'm definately coping a lot better & I feel so thankful that she can hear, she can see and can walk and have felt a bit guilty for being so emotional over it....I do get upset from time to time when I think about her having an operation, and worry that her speech may not be clear...I have hope though, and reading your messages comfort me so much knowing that I'm not the only one who is feeling this...sorry for the long post but I just got emotional when I read all the messages...I have so much more to say but I'll stop for now

[leesha]

Hi all!!!
Great news..We had a gorgeous little boy called Taj on June 11th so he was 6 days early!! He was in a bit of a hurry but he waited till I had been to Gold Class to see Sex in The City with my girlfriends!! Maybe all the food I ate started my labour!!
He was 8lb 2oz which is a great size but GUESS WHAT.......................his palate is intact after being told from ultrasounds that it wouldn't be! It was the best news ever!!!
He has a bilateral lip and has an appointment with his surgeon in 2 weeks at the RCH melb which
I am looking forward to so we can find out what happens next!!
I have 3 haberman feeders as I thought he was not going to be able to suck but he can!! He sucks the milk out of the bottle himself and I don't have to squeeze at all!! Clever little guy!! I am expressing my milk and feeding him that so he is already back to his birth weight within the first two weeks!!
With a nipple shield he can suckle on the breast too which is great for our bonding time!! My lactation consultant at the hospital has been an awesome support and I think that is what you need..Great support!!!!

To SMx83....what a shame they didn't pick up on the cleft earlier so you could of been prepard beacause it is a shock to the system!! You sound very brave and strong tho which will help you get thru and if you have love and support you will be fine!!! Taylor loves you unconditionally and she is perfect isn't she!!!!! Her gorgeous smile will keep you focused and it is all fixable with a little surgery!! Hang in there and if it's all getting a bit much then pour your heart out on here..we will listen!!!!
I have to go Taj is due for a feed and is very demanding at 12 days old!!!!! Will be back and try to post some photos for all to see!!!
xoxoxoxox

[Pretty Butterfly]

Oh Leesha, Huge congrats honey!!! And with no cleft palate, thats half the job fixed already!!! lucky little man!!

Smx83.. I completely understand babe. When we found out during the pregnancy I cried most days till i had him... I'm a big cry baby at the best of times!! Kane has also failed all his hearing test, but can hear okay generally.

Come visit all us ladies anytime babe, were all in this together honey!!

[Smx83]

Hi Purplemamma & Leesha,

Thank you so much for your support and your support....I felt really guilty being so upset because I thought that maybe I was being a bit ungrateful....I am a lot better & the feeding is getting better although she is at her 9 week spurt this week so is a bit whingy but not too bad.

I don't bawl my eyes out as much these days! Thank goodness...it was definately a big shock to the system & I had a lot of fear about what my families would say but now I don't care anymore & I am definately thankful that it is something that can be fixed & she should not be treated any differently!

Leesha, you are so blessed that your bub is okay & can bond with your baby by breastfeeding!

My husband thinks we should start her on solids soon....because sometimes the feeding is still a bit hard...not sure if it's a good idea starting her this early...has anyone started their babies on solids earlier than 6 months with a cleft?

Does this mean that food will come out of her nose?!

Thanks! Sharon xxxx

[leesha]

Hi all,
Taj is doing really well and feeding like there is no tomorrow!! I am lucky he does have his palate because he can suck out of the bottle himself!!! I am still expressing...2 months now!!! Every 6 hours i am on that pump! It's hard work but worth it when he gets weighed because he is doing great!
He had his first immunisation last week and cried but I didn't so I am very proud of myself!!

We have an app at the RCH on friday to do impressions for a dental plate cos is top gum sticks out a bit...but they aren't sure how far they can push it back because he does have his palate...do you have any info on dental plates and if they are painful or hinder feeding etc...????

They are going to operate at 6 months on his lip so until then not much is happening!!

I am still trying to figure out how to get pics on here so you can see him...I am a bit computer dislexic! Heeeeeeeheee!
Hope you are all well and talk soon!!!
Leesha xoxoxoxoxox

[Pretty Butterfly]

Oh babe, I'm so glad he is doing so well!!!!!

With the dental plate, it is used to push a palate back together, or push a gum back. Kane has a cleft lip and gum!!

My surgeon doesn't think they do much good, and we never used one, even though he has a wide cleft. He said they get enough "growth" before surgery anyway, without the hassle of a plate. I was dubious, but Kanes palate and gum space are at least half there size than at birth!!!!

I know a mum on here questioned her doc about them, he wanted them to have it, and then agreed to not do it, so just get all the info you can first. That said, he may need it anyway!!

Let us know how you go babe!!!

[Nettie]

Leesha - for the expressing! Yes, it's hard work and I gave up after 3 months (supply dropped to less than one feed a day by then!) so I can certainly empathise.

Liam started with a plate for feeding but gave up on it after 3 weeks as he learnt to feed without the plate (clever boy!) and we haven't looked back! However, I think the plate Liam had fitted was a different one than you're talking about!

Hope all our clefty bubbas are doing well... isn't it funny they're mostly boys?

[Nettie]

Went to 'Cleft clinic' today and they just asked about his feeding etc and we were told that we could try him on solids from 5 months but to make it quite runny to begin with (especially because of the cleft). We're going back in December to schedule the surgery for March-ish... Liam was fabulous again today - he's a real trooper, even when he's overtired, overstimilated and generally stuffed around with. What a little man!

[Smx83]

Hi guys, Just thought I'd give you guys an update...Taylor is 5 months next week and had her check up at the hospital for her surgery, need to get her hearing tested next month to determine whether she needs grommits...has anyone got a bub who has had grommits?? If so, what ways do you keep their ears dry, ie bathing and swimming as I would like to take her for swimming lessons in the summer but unsure what I can do to keep her ears from getting wet...

Also, just from speaking to some mothers at the last hospital trip, I noticed a mother was using the rubber pigeon teat and the squeeze bottles....I was chatting with her and she was struggling with this feeding technique as did I when Taylor was newborn and told her about the easy feed chu chu teat, she had no idea that it existed and was told it was no longer available (they must've got the old chu chu flat teat mixed up with this one that I was talking about)....so I do know for a fact that it is being used as when I went to the hospital for an emergency appointment (Taylor was struggling/losing weight, my arm was killing me from squeezing and needed help) and they had given me some teats that not many people knew about and these teats are available but from speaking to the staff at the hospital not many people seemed to mind the pigeon teats or had trouble like I did and so not many people knew about this other option...it is not the old chu chu teat but another type which is still called a chu chu which looks like a normal silicon teat but has a larger hole for the baby to drink out of (when you turn the bottle upside down it drips) I used this on Taylor and it is a MIRACLE....she drinks it so fast...takes her less than 10 minutes...I used to have to stop her sometimes because she drank it so fast when I first started using it! The best thing is that you don't need to squeeze the bottle AND you can buy any normal bottle from anywhere as long as it is the tall straight narrow ones and just replace the teats with the chu chu easy feed teat and no one would ever know your baby had feeding troubles!! I can give you more details if you need more...I just wanted to pass this on to any mums who are struggling with the squeezing method or just want to try this other option as I know that I would have loved to have known this when I was struggling in the early stages! xxx

[Pretty Butterfly]

Nettie, thats great!! Way to go Liam!!

I love how all doctors are different!! We were told to hold off on solids as long as possible as the extra food that goes up into the passages from the palate can cause more/worse ear infections... Kane was exclusively on EBM till 8 months, and then solids took a while, it does come out the nose a lot!!!

Kanes palate op will be oct/nov!!! I cant wait to ditch the bottle and teach him how to use a sippy cup and a straw!!

Clefts are more predominant in boys, and if I remember right, so is PRS.... This new bubba is a GIRL!!! And no cleft!!! Im so excited, bring on the normal b/feeding, and NO PUMPING!!!

Hope all are okay ladies!!!

[Nettie]

Congrats PM! I know you were worried about this one so I bet that's a load off your mind!

Let us know when you have a date for the op - I'll be thinking of you both!

Liam's been making 'chewing' actions so we think he's ready for more substantial food. He also still feeds every 3 hours (has since 1 month old) so we're sure he's not satisfied with just milk...